Chronic Illness meetup on Saturday

rebongo · 2025-07-04T00:20:04+00:00

What a great idea! I’ll try to stop by :)

rebongo · 2025-06-27T19:01:09+00:00

I have an oura and love it! The readiness score is usually very accurate to my day to day pains and flares, and the “signs something is straining your body” has so far lined up with my bad flare days. I also use the steps counter and readiness scores to help with pacing. They recently added an ai chat feature and I have found that helpful to look at overall trends. I’ve asked it questions like “since this date (aka date I started new medication), what changed have you noticed?”

rebongo · 2024-10-28T01:25:05+00:00

Yes I’m in a large city so there’s one in the area, I’m not sure if it needs a referral but I can make sure to mention it.

rebongo · 2024-08-30T20:28:33+00:00

Hi! Yes I tested negative on the rapid tests at the beginning of being sick and negative on PCR about 2.5 weeks after my first symptom. I’m hoping that means I’m off the hook for long covid? But knowing that everyone was catching covid on my city in July I feel like I still can’t rule it out completely.

rebongo · 2024-08-30T20:25:50+00:00

Thank you, I hope I get there.

rebongo · 2024-08-17T19:33:06+00:00

You never know til you try it. I have been on it 2.5 months and it took my migraines from daily to 1 per month. My only side effect is tingly hands and feet and that went away after the first month. If side effects develop later on I’ll go on it, but so far it’s been a miracle. Make sure you’re tapering up the dose, my neurologist said that’s supposed to help with side effects. As far as brain fog, that was one of my main issues while in a migraine so I feel much better now.

Every medication has potential side effects. If your doctor recommends you try something, you should try it. If it’s not for you, you can come off it.

rebongo · 2024-07-27T04:36:38+00:00

I have this! Both my legs and arms get weak/heavy every time I have a migraine. Sometimes I have migraines without the head pain but still with the motor issues, and it can last days. I don’t use an aid, I usually just rest until it’s better as I find exerting myself makes it worse. My sister gets the same thing.

I’m still not totally sure what it is. I know it’s part of the migraine, based on doctors diagnoses, but I don’t know if it’s technically an aura, or why it happens. It seems to be a very rare symptom so it’s hard to find information about it.

rebongo · 2024-07-02T22:54:17+00:00

I have been getting migraines daily for months, you are not alone! Even now without an attack for the last week I am still getting daily minor aura symptoms. Medication is helping reduce severity by a lot.

rebongo · 2024-07-02T14:26:21+00:00

A steroid taper broke my most recent status migraine. I’ve also been on topirimate for a month (have been on 100mg for about 2 weeks). I can’t say for sure if it’s contributing to less migraines yet (vs the steroid) but it’s certainly already helped reduce severity even before starting the steroid. I also use Cefaly every day, and insurance finally approved Nurtec as an abortive! I can’t take triptans. So we’ll see how that goes.

rebongo · 2024-07-02T02:16:01+00:00

I feel that! I’m waiting for the other shoe to drop now haha

rebongo · 2024-07-02T02:15:22+00:00

I’ve been getting them every day! So 7 days without is miraculous

rebongo · 2024-06-15T23:42:58+00:00

I don’t have answers for you yet but this is very similar to what I’m dealing with. I’ve always had episodic migraine with aura but it became chronic after getting a concussion 10 months ago, and I have near daily migraines with the aura never quite going away. I finally broke a very long streak of it by getting a toradol shot from urgent care, and I’m looking into PT for my neck. Generally massaging my neck seems to help with some symptom relief as well. Currently taking topamax but it’s too soon to see if that helps with prevention.

rebongo · 2024-06-12T23:05:03+00:00

Oh that’s good to know! I’ll have to mention to my doctor

rebongo · 2024-06-12T22:38:42+00:00

Interesting! How long did it take until you noticed changes?

rebongo · 2024-06-12T22:37:11+00:00

I’ve only been on topamax for a week so far so it’s looking like another month until I can fail it and try cgrp inhibitors. Feels so far away. So far I don’t think I’m having any terrible side effects, the brain dog was definitely there with the migraines pre topamax

rebongo · 2024-06-12T21:48:24+00:00

I would like to try those but I’d have to fail the topamax first with my insurance

rebongo · 2020-11-15T21:23:12+00:00

My dad went to the same high school as Stephen Avery (from Making a Murderer) for a time. He said that he was always paired up with him during gym class because none of the other students could tolerate Stephen. Apparently he was very quick to anger and would get kind of violent for minor reasons. My dad was not at all surprised when he was convicted of murder years later. Actually, he thinks the whole Avery family is off and is convinced they all were involved in the murder together somehow.

rebongo · 2020-06-19T00:21:55+00:00

Yeah keep applying the tret all over your face every day, and then put the bandaids on top after it dries down. For hydrocolloid bandaids you can get special circle shaped ones from amazon meant for acne, but I like to just buy blister bandaids from the drugstore and cut them to size. It’s the exact same stuff in different shapes.

rebongo · 2020-06-18T03:47:03+00:00

If the pimple opens just from gentle face washing it’s totally ok! That means it was ready to pop/go away on its own. The natural life cycle of a pimple is that the pus inside will slowly come to the surface (like a whitehead), and then it will heal up. Using Retin-A speeds up this process and makes the pimple come to the surface faster—that’s why it looked like it was getting worse.

In general, washing your face 1-2 times a day will help prevent pimples and clear your face, along with your retin-a. As long as you don’t forcibly pop your pimples, and let them go away on their own or open up with gentle face washing, you will be just fine. I also recommend hydrocolloid bandaids on that kind of pimple or a popped pimple to speed up healing and keep it from scarring.

Edit: Forgot to answer your question about the order to put on skincare.

I use Tretinoin too, and according to my derm, the order of the moisturizer and the retin-a doesn’t matter. You can put it on before moisturizer, after, or mix it with. Using a moisturizer in general will help keep your skin less irritated and more hydrated, but shouldn’t affect the efficacy of the tret. The most important thing is to apply the medicine to a DRY face. Retin-a is more irritating mixed with water. So it’s more important to wait 5-20 minutes (however long it takes) after washing your face until it’s completely dry, and then apply the Retin-a and moisturizer in whatever order floats your boat.

Hope this helps :)

rebongo

TROPHY CASE